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ABSTRACT

Purpose: There is wide variability in how spouses providing care respond to their care situations. Few studies focus on the roles of both intra- and interpersonal factors in long-term spousal care, particularly in the context of Parkinson's disease (PD). The current study uses longitudinal data over a 10-year period to examine the roles of optimism, pessimism, mutuality, and spouse gender in predicting role strain in PD spouses.

Design and Methods: A longitudinal design was used to study 255 spouses of persons with PD over a 10-year period, with data points at baseline (Year 0), Year 2, and Year 10. A series of multilevel models were used to examine four role strain variables-global strain, strain from worry, strain from feelings of being manipulated, and strain from increased tension.

Results: Female spouse gender predicted both higher Year 10 role strain and faster increases in role strain over the 10-year period. In addition, high mutuality and optimism and low pessimism at baseline played important protective roles against increased role strain at Year 10.

Implications: This study focused on early-stage spousal care in a primarily physical disability context. Findings suggest that gender differences place wives at greater risk for negative outcomes, even in the absence of dementia. Additionally, clinicians have opportunities to target interventions early in the care trajectory based on intra- and interpersonal risk factors.

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Review contributed by Barbara Habermann, PhD, RN

This article by Lyons and colleagues makes an important contribution as it is one of the few longitudinal studies examining gender differences in long-term spousal carers in Parkinson's disease (PD). The majority of studies focusing on providing care to an elderly family member have been cross-sectional designs and primarily focused on caring for someone with dementia.

Spouses have long been established as the primary caregiver in PD. This study followed spousal carers for 10 years, measuring both intra- and interpersonal factors. Specifically, the researchers examined the roles of optimism, pessimism, mutuality, and spouse gender in predicting role strain in spouses. Several of the findings are important not only for future research, but because of significant clinical implications and potential for interventions. Spouses caring for a family member with PD are at risk for experiencing increased strain. There are differences based on gender, with wives experiencing increased role strain at Year 10. In addition, mutuality (marital quality) can protect against global role strain and strain from feeling manipulated. Lastly, baseline optimism and pessimism scores can help predict strain from increased tension at Year 10.

So what do these findings suggest? Early in the disease process couples could benefit from interventions that enhance or support communication, problem solving and sustain mutuality or relationship quality. Incorporation of the spouse into health care visits and having a focus on the couple as a dyad may help couples engage in some of the difficult discussions that are required as PD progresses. While high mutuality may have a protective effect in some areas, it can also result in an increase in worry. The authors suggest clinicians can support spouses by helping them prepare and plan for "worst case" scenarios. Thus, this study's findings reinforce the need to assess spouses at risk for increased strain that predicts both poorer physical and mental health outcomes. More longitudinal research with PD couples, as opposed to PD spouses only, is needed in order to better understand the issues and target interventions that benefit both spouses. Studies that have more frequent measurement intervals across the illness trajectory will increase our understanding of care complexities.

About Barbara Habermann, PhD, RN

Barbara Habermann is the Associate Professor of the Department of Family Health Nursing at Indiana University, Indiana, USA. She is also a member of the Core faculty, IU Research in Palliative and End-of-Life Communication and Training (RESPECT) Center. Dr. Habermann's research focuses on improving the quality of life for persons and their family members living with chronic, progressive neurologic illness.

Her preliminary work in this area has been predominately qualitative, describing the needs and challenges experienced by persons with Parkinson's disease and their spouses and how they manage as a family. This "research," in collaboration with colleagues, led to a five-year skill building intervention trial for family caregivers of those with chronic neurologic illness. Her current work focuses on identifying the dyad needs in couples with advanced to end stage Parkinson's disease and Multiple Sclerosis.

Dr. Habermann serves as a co-director of the T32, Training in Behavioral Nursing. She is active in a number of nursing organizations, having previously served on the Board of the Southern Nursing Research Society and as Chair of the American Nurses Foundation Research Review Committee.

For more information on the IU Research in Palliative and End-of-Life Communication and Training (RESPECT) Center, please visit www.iupui.edu

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